Working for Equitable Care for Sickle Cell Disease
by Dawn Hibbard
Our speaker Aug.14 was Stephanie Worth from the Voices of Winged Warriors (VOWW), a Michigan-based nonprofit organization founded by Stefanie Worth to support individuals, caregivers, and grievers affected by sickle cell disease (SCD). Launched following the 2023 loss of her son, Thomas, to SCD complications, VoWW transforms grief into active advocacy, better emergency medical care, and community support.
Worth shared with us that 1,000 a day die from SCD worldwide. It primarily affects people with African and Mediterranean heritage, but can affect anyone of any ethnic background. SCD trait shows up in a blood test, and all newborns in Michigan are screened at birth.
Her journey with SCD started with her son Thomas, who had 24 hospitalizations for SCD before the age of five. He went on to graduate from college with aspirations for a career in design before he died from SCD complications.
Worth shared that current curative therapies for SCD cost about $1-2 million each. Genetic treatments run closer to $3 million. Because of the prohibitive expense, patients are frequently in and out of emergency rooms seeking short term care in the form of pain management. Research funding is three times higher for Cystic Fibrosis, despite the fact that three times as many people suffer from SCD than do from Cystic Fibrosis. The two diseases are both
severe autosomal recessive disorders that impact breathing and body organs.
She said there are about 300 treatments available, but many are still in the research phase, so most SCD patients rely on emergency room care.
Unfortunately, there is a lack of SCD treatment centers nationwide and a lack of guidelines for care. VOWW has developed a standards of care cheat sheet for medical professionals based on the acronym STAT, which stands for Stop, Triage, Assess, Test.
One of VoWW's primary strategic goals is to move beyond awareness. Through Sickle Cell STAT, the organization advocates for, and works to help ensure that knowledgeable, quality, guideline-based emergency room treatment becomes the standard for every individual with sickle cell.
President Domonique Clemons with Stefanie Worth and Elissa White, daughter of the speaker.
What Are You Reading?
Shaking up your reading list is one way to encounter different perspectives from your own. Both nonfiction and fiction offer entry points to learning- and memoir can be an especially powerful genre because it offers a window into someone else's life without putting the burden on another human being to use their life to teach.
Choosing a memoir written by someone who differs from you in an important social respect (such as sexual orientation, race, gender, or religion) and who writes about that part of their life experience can be eye-opening. It also may offer the chance to see a person in relation to their family, community, and wider society in ways that we do not often have access to outside of our close friend circle in real life.
Here are a few memoirs that might be part of a reading list. What would you add?
Brother, I'm Dying by Edwidge Danticate- shares her experiences in a family shaped by life in Haiti and migration to the US.
Between the World and Meby Ta-Nehisi Coates- from the perspective of a Black man thinking about how he experiences race
All Boys Aren't Blue by George Johnson- focuses on Black queer identify and experiences
Obasan by Joy Kogawa- technically a novel, it is closely based on the author's own experiences as a child in Canada whose family went through Japanese internment.
Life on the Color Line by Gregory Howard Williams- written by a man who grew up believing he was white and discovered his family was multiracial.
Our Latest Paul Harris Fellow
On August 14, the Rotary Club of Flint honored Jerry Knoodle as our latest Paul Harris Fellow. Named for the founder of Rotary, Paul Harris Fellows are recognized for charitable contributions totaling $1,000 to the Rotary International Foundation. For Jerry, this was his PHF+2.
Please join us in congratulating Jerry, and please consider joining Jerry in supporting the charitable work of Rotary International!
New Member Second Reading
Name Classification Proposed By
Lashaya Darisaw Consulting- Business Domonique Clemons
Members wishing to comment on proposed members must do so in writing to Club Secretary Ellen Echols no more than two weeks following the second reading.
Next Up: Thirsty Thursday- August 20 at Blackstone's, 5 pm
Last Chance to Volunteer for the Crim Rotary Mile
District 7 clubs will once again be staffing the water station and intersections along our section of the Crim Festival of Races on Saturday, August 22. Please sign up to volunteer! It starts with a fabulous breakfast at Mike Chaffee's at 6 am and you will be done before noon. It's a great way to be part of one of Flint's premiere events as you enjoy some Rotarian fellowship.
There is another volunteer opportunity the same weekend- with the Ally
Photo booth at a previous Crim race
Challenge. Volunteer slots are available throughout the week of August 24-30- you can sign up here.
